05 July 2014

Can Anyone Remember When I Used to Be an Explorer?

There's a genuinely great moment in Star Trek: Insurrection, an otherwise mixed Trek outing. Captain Picard, wary of his assignment to recruit a new member to the Federation for the express purpose of deepening the roster at a time of war, wonders aloud, "Can anyone remember when we used to be explorers?"

That's about how I feel about my health. A little more than a week ago, I finally got to see honeyhoney perform in concert, at a little dive called Zanzabar in Louisville. I'd wanted to see them perform for six years, and was thrilled to finally get to do so. It was also my first concert since Black Joe Lewis in 2012, which you may recall was quite a big deal for me, Dear Reader. I invited several of my friends to turn up for the show, but only one managed to make it. (Funnily enough, this friend also has Crohn's.) We had a ball, and I was thrilled to share the experience with her. After the show, we got to chat with Suzanne Santo and Ben Jaffe for a bit. My friend shot this picture of me with them, and we have really creepy reflective peepers. Oh, well. Whaddya gonna do, right?


I've spent most of this entire week completely exhausted, though. I spent a little bit of time Monday evening with my niece. She called me again on Wednesday to see about hanging out, and I had to pass because I could barely keep my eyes open. I missed most of my friends's annual Fourth of July party last night because insomnia Thursday night into Friday morning caught up with me and I slept through the afternoon and early evening. I woke up just before 7:00 in the evening, dashed over as quickly as I could, and was too run down to stay past around 10:30. They were actually still lighting off fireworks when I bailed. I slept for about 15 1/2 hours once I got home, not getting up until late afternoon/early evening today.

And this, Dear Reader, is on the "good" side of what life with Crohn's is like.

Nobody told me about this part. They told me all about the Prednisone, and upper GI's, and other such things, but they didn't say anything about whole weeks lost to fatigue and unearned soreness. It didn't used to be like this. I know it didn't. I can prove it, because I have a record of all the baseball games, concerts, and movies I attended in my teens and twenties. There is evidence that I used to be a goer and a doer. I spent two weeks in Barbados back in 2000. I spent a combined two weeks in Las Vegas at the end of 2002. Sure, when I worked at Cracker Barrel, I wasn't as able to up and go do things because I had to work weekends (that's the nature of restaurant work, after all), but even then I managed to make my way out to my fair share of events.

And yet, these days I often feel as though I've researched someone else's life rather than recalled my own; that these artifacts belong to someone else rather than to me. There are, of course, plenty of other activities that didn't have a ticket stub. I know I spent evenings in the summer of 2001 at a defunct driving range in Pendleton, KY, whacking away at golf balls for hours on end with my brother and various friends. Used to just take off driving with no destination in mind with friends (remember when anyone could actually afford to go joy riding?).

I'd hear a song that caught my ear and wind up spending an entire day crisscrossing Louisville's music stores, hunting down every single thing I could find in that artist's discography. It was as much about the search as it ever was about the acquisition. I loved those days of hoping one record shop might have something none of the others had, and there were no meaningful barriers to making the effort to find out.

But, that was a long time ago in another life.

Today, any outing at all for me has to consist of at most a few specifically targeted places. They have to be near one another, and I have to know exactly what I'm hoping to find so I can get in and out before I feel too miserable to continue. Sure, I can research a discography online these days, and between Amazon, eBay, and iTunes find most anything, but it isn't the same as doing the legwork. Because, again, it was never just about acquiring the music. It was about going on an adventure, not even knowing what existed so I hoped to be surprised at what I found. I remember getting the biggest kick out of discovering The Best of Country Sings the Best of Disney, which I bought on a lark because I was on a Collin Raye kick at the time. (It turned out he did an absolutely brilliant cover of "A Whole New World", by the way, that was well worth the purchase.)

Sometimes I wonder, when I think of what it was like when I was healthy, just how the passage of time and the wear and tear on me appears to the healthy people around me, who were there for the good times. I used to be the given in pretty much any plan. No advanced notice necessary. No one even asked if I wanted to go do something; they just showed up and said, "We're going out" and I'd throw on some pants and away we went. Then it reached the point where invitations were extended more as a formality, knowing I'd wind up either declining or having to cancel at the last minute. Everyone has always been polite about it, reassuring me that they understand why I can't or didn't attend one function or other.

Of course, my health isn't the only thing that has changed these last nine years. We've all gotten older, become more involved with different things that preclude up and going out on a whim. That's just the nature of things. Aside from my health, I'm the one freest to go along with an idea these days. Everyone else has a significant other and/or at least one child. Some have demanding careers. There's nothing unique in any of this, but at the very least, there's satisfaction to be found in being a spouse or a parent, or in a career. There's no satisfaction whatsoever to be found in simply having rotten health.

Days like today bring me a combination of disappointment and resentment toward myself. It's been a decade now since Crohn's first appeared in my life (I was misdiagnosed in 2004), and I still feel bitter about every time I've had to say "Sorry, I can't do it", "Sorry I'm late", and/or "Sorry, I need to go." Some might roll their eyes at this post and mutter something about how I'm "feeling sorry for myself". This isn't Depression talking/writing, though. This is just a part of the frustration that goes with this stupid disease and the wear and tear it wreaks.

How about it, Dear Reader? If you have a health problem limiting you, how do you feel about it? If you've been part of my life going back to my healthy years, I'd be curious to hear how you perceive the changes in me over these last nine or ten years. And if you were at that honeyhoney show, I'd love to know if you could fill in a couple gaps in the set list!

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